IDEAS home Printed from https://ideas.repec.org/a/sae/medema/v43y2023i2p203-213.html
   My bibliography  Save this article

Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study

Author

Listed:
  • Semra Ozdemir

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
    Saw Swee Hock School of Public Health, National University of Singapore, Singapore)

  • Isha Chaudhry

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
    Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore)

  • Si Ning Germaine Tan

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
    Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore)

  • Irene Teo

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
    National Cancer Centre Singapore, Singapore)

  • Chetna Malhotra

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore)

  • Rahul Malhotra

    (Signature Program in Health Services and Systems Research; Centre for Aging Research and Education, Duke-NUS Medical School, Singapore)

  • Eric Andrew Finkelstein

    (Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
    Saw Swee Hock School of Public Health, National University of Singapore, Singapore
    Duke Global Health Institute, Duke University, USA)

Abstract

Objective We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. Methods We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients’ quality of life and perceived quality of care. Results The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached ( P

Suggested Citation

  • Semra Ozdemir & Isha Chaudhry & Si Ning Germaine Tan & Irene Teo & Chetna Malhotra & Rahul Malhotra & Eric Andrew Finkelstein, 2023. "Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study," Medical Decision Making, , vol. 43(2), pages 203-213, February.
  • Handle: RePEc:sae:medema:v:43:y:2023:i:2:p:203-213
    DOI: 10.1177/0272989X221131305
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/0272989X221131305
    Download Restriction: no

    File URL: https://libkey.io/10.1177/0272989X221131305?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. L. Aubree Shay & Jennifer Elston Lafata, 2015. "Where Is the Evidence? A Systematic Review of Shared Decision Making and Patient Outcomes," Medical Decision Making, , vol. 35(1), pages 114-131, January.
    2. Dana L. Alden & John Friend & Ping Yein Lee & Yew Kong Lee & Lyndal Trevena & Chirk Jenn Ng & Sorapop Kiatpongsan & Khatijah Lim Abdullah & Miho Tanaka & Supanida Limpongsanurak, 2018. "Who Decides: Me or We? Family Involvement in Medical Decision Making in Eastern and Western Countries," Medical Decision Making, , vol. 38(1), pages 14-25, January.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Semra Ozdemir & Jia Jia Lee & Khung Keong Yeo & Kheng Leng David Sim & Eric Andrew Finkelstein & Chetna Malhotra, 2023. "A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure," Medical Decision Making, , vol. 43(7-8), pages 863-874, October.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Sumayah Rodenburg-Vandenbussche & Arwen H Pieterse & Pieter M Kroonenberg & Isabelle Scholl & Trudy van der Weijden & Gre P M Luyten & Roy F P M Kruitwagen & Henk den Ouden & Ingrid V E Carlier & Iren, 2015. "Dutch Translation and Psychometric Testing of the 9-Item Shared Decision Making Questionnaire (SDM-Q-9) and Shared Decision Making Questionnaire-Physician Version (SDM-Q-Doc) in Primary and Secondary ," PLOS ONE, Public Library of Science, vol. 10(7), pages 1-15, July.
    2. Scherr, Sebastian & Reifegerste, Doreen & Arendt, Florian & van Weert, Julia C.M. & Alden, Dana L., 2022. "Family involvement in medical decision making in Europe and the United States: A replication and extension in five Countries," Social Science & Medicine, Elsevier, vol. 301(C).
    3. Underman, Kelly & Hirshfield, Laura E., 2016. "Detached concern?: Emotional socialization in twenty-first century medical education," Social Science & Medicine, Elsevier, vol. 160(C), pages 94-101.
    4. Chia-Hsien Chen & Hsin-Yi Chuang & Yen Lee & Glyn Elwyn & Wen-Hsuan Hou & Ken N. Kuo, 2022. "Relationships among Antecedents, Processes, and Outcomes for Shared Decision Making: A Cross-Sectional Survey of Patients with Lumbar Degenerative Disease," Medical Decision Making, , vol. 42(3), pages 352-363, April.
    5. Maya Kylén & Ulla-Karin Schön & Hélène Pessah-Rasmussen & Marie Elf, 2022. "Patient Participation and the Environment: A Scoping Review of Instruments," IJERPH, MDPI, vol. 19(4), pages 1-17, February.
    6. Francesco Baratta & Francesco Angelico & Maria Del Ben, 2023. "Challenges in Improving Adherence to Diet and Drug Treatment in Hypercholesterolemia Patients," IJERPH, MDPI, vol. 20(10), pages 1-12, May.
    7. Mara Gorli & Serena Barello, 2021. "Patient Centredness, Values, Equity and Sustainability: Professional, Organizational and Institutional Implications," Sustainability, MDPI, vol. 13(23), pages 1-7, November.
    8. Rami H. Al-Rifai & Iffat Elbarazi & Nasloon Ali & Tom Loney & Abderrahim Oulhaj & Luai A. Ahmed, 2020. "Knowledge and Preference Towards Mode of Delivery among Pregnant Women in the United Arab Emirates: The Mutaba’ah Study," IJERPH, MDPI, vol. 18(1), pages 1-11, December.
    9. Yuko Goto & Hisayuki Miura, 2022. "Validation of the Novel Interprofessional Shared Decision-Making Questionnaire to Facilitate Multidisciplinary Team Building in Patient-Centered Care," IJERPH, MDPI, vol. 19(22), pages 1-13, November.
    10. Lama Sultan & Basim Alsaywid & Nynke De Jong & Jascha De Nooijer, 2022. "Current Trends in Interprofessional Shared Decision-Making Programmes in Health Professions Education: A Scoping Review," Sustainability, MDPI, vol. 14(20), pages 1-39, October.
    11. Charlotte Ytterberg & Hanne Kaae Kristensen & Malin Tistad & Lena von Koch, 2020. "Factors related to met needs for rehabilitation 6 years after stroke," PLOS ONE, Public Library of Science, vol. 15(1), pages 1-15, January.
    12. Arwen H. Pieterse & Kim Brandes & Jessica de Graaf & Joyce E. de Boer & Nanon H. M. Labrie & Anouk Knops & Cornelia F. Allaart & Johanna E. A. Portielje & Willem Jan W. Bos & Anne M. Stiggelbout, 2022. "Fostering Patient Choice Awareness and Presenting Treatment Options Neutrally: A Randomized Trial to Assess the Effect on Perceived Room for Involvement in Decision Making," Medical Decision Making, , vol. 42(3), pages 375-386, April.
    13. Ruth E Pel-Littel & Cynthia S Hofman & Liesje Yu & Silke F Metzelthin & Franca H Leeuwis & Jeanet W Blom & B M Buurman & Mirella M Minkman, 2019. "Recommendations of older adults on how to use the PROM ‘TOPICS-MDS’ in healthcare conversations: A Delphi study," PLOS ONE, Public Library of Science, vol. 14(11), pages 1-17, November.
    14. Anders Broström & Bengt Fridlund & Berith Hedberg & Per Nilsen & Martin Ulander, 2017. "Communication between patients with obstructive sleep apnoea syndrome and healthcare personnel during the initial visit to a continuous positive airway pressure clinic," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(3-4), pages 568-577, February.
    15. Footman, Katy, 2024. "The illusion of treatment choice in abortion care: A qualitative study of comparative care experiences in England and Wales," Social Science & Medicine, Elsevier, vol. 348(C).
    16. Michael Brown & Anna Higgins & Juliet MacArthur, 2020. "Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities," Journal of Clinical Nursing, John Wiley & Sons, vol. 29(1-2), pages 195-207, January.
    17. Meron Hirpa & Tinsay Woreta & Hilena Addis & Sosena Kebede, 2020. "What matters to patients? A timely question for value-based care," PLOS ONE, Public Library of Science, vol. 15(7), pages 1-16, July.
    18. repec:oup:jconrs:v:49:y:2023:i:5:p:926-939. is not listed on IDEAS
    19. Jayoung Han & Paiboon Jungsuwadee & Olufunmilola Abraham & Dongwoo Ko, 2018. "Shared Decision-Making and Women’s Adherence to Breast and Cervical Cancer Screenings," IJERPH, MDPI, vol. 15(7), pages 1-13, July.
    20. Aleksandra Kołtuniuk & Justyna Chojdak-Łukasiewicz, 2022. "Adherence to Therapy in Patients with Multiple Sclerosis—Review," IJERPH, MDPI, vol. 19(4), pages 1-9, February.
    21. Loïs F. van de Water & Danique W. Bos–van den Hoek & Steven C. Kuijper & Hanneke W. M. van Laarhoven & Geert-Jan Creemers & Serge E. Dohmen & Helle-Brit Fiebrich & Petronella B. Ottevanger & Dirkje, 2024. "Potential Adverse Outcomes of Shared Decision Making about Palliative Cancer Treatment: A Secondary Analysis of a Randomized Trial," Medical Decision Making, , vol. 44(1), pages 89-101, January.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:medema:v:43:y:2023:i:2:p:203-213. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.